Swimming for a Cure: Support USH X Swim Alcatraz 2026

In 2009, when Ethan was seven and Gavin was five, our family received the Usher syndrome type 1b diagnosis that completely rewrote our lives.

We already knew our sons had been born with profound sensorineural hearing loss; by then they both had cochlear implants. Honestly, at the time we thought we had everything under control. We had navigated the surgeries, programming, auditory-verbal therapy, and early intervention services. They were thriving, communicating, adapting, and engaging with the world with incredible energy, so we felt confident we were on the right path.

The Usher syndrome diagnosis changed everything. It finally gave a name and explanation to the balance difficulties they had struggled with since infancy: not clumsiness or delayed motor milestones, but absent vestibular function. It also carried an even heavier truth, progressive vision loss from retinitis pigmentosa, which would gradually narrow their peripheral vision and could ultimately lead to blindness. In those early weeks, gripped by the shock of what lay ahead, our instinctive reaction was to ask for help. We immediately began fundraising for research, driven by the desperate hope that science could move fast enough to halt what was coming.

This is actually a good opportunity to take a heartfelt moment to recognize and thank all of our incredible family, friends, and supporters who generously donated back in 2010 through Fighting Blindness Canada. At the time, those funds contributed to broad retinal research rather than directly targeting Usher syndrome type 1b. But science builds upon itself and today, every single effort and contribution from our community has paved the way to this very moment.

Since their diagnosis, we have done what we can to find and provide the opportunities that would build the advocacy skills and resilience they would need for the rest of their lives.

Rather than just participating, they found meaningful ways to contribute and serve as leaders. From an early age in Canada, they stepped up to give speeches and present at fundraisers, conferences, schools, universities, and community events. Since moving to the United States, Ethan and Gavin have served as Advocacy Ambassadors for Ava’s Voice, later becoming USHmentors after helping launch the very first USHthis Camp in 2019 in the US and later being part of the first camps in the UK and Australia. Whether sharing their lived experiences through the Usher Syndrome Society’s Sense Stories and SPAN’s Amplify Advocacy video series, being mentors for the SPAN Parent Advocacy Networks’s Deaf Mentor Program, publishing articles, or leading youth initiatives, they have welcomed opportunities to step into leadership roles, hoping their achievements might serve as an encouraging example for others walking a similar path.

That same dedication carried directly into athletics. Because of their absent vestibular function, developing balance wasn’t simple; it took years of dedicated physical therapy, personal training, and countless hours in the gym to build the core strength their bodies needed. Over the years, they threw themselves into a variety of sports, but the water always remained a comfortable element. They went on to become varsity high school swimmers, capturing national para-swimming championships at the 2019 Adaptive Sports Junior Nationals and 2019 Paralympic Championships as well as All-American para-swimming honors. Having spent so much of their lives training in the pool, they are genuinely excited to channel that love of swimming into the challenge of the USH X Swim Alcatraz fundraising event.

Now young men and students at the Rochester Institute of Technology (RIT), Ethan pursuing engineering at RIT and Gavin earning his master’s in finance, their foundation is built, their advocacy skills are sharp, and their confidence is rock-solid. We are in a very different place than the future I had worried about 17 years ago.

Gavin competing in 100 Breaststroke for the Scotch Plains Fanwood Y Swim Team in 2019

They are doing the swim to support the Usher Syndrome Society because the organization has fundamentally shifted what is possible in the research world.

For years, rare disease research moved in isolated silos. The Usher Syndrome Society changed that equation by directly committing millions of dollars to cutting-edge research across leading global labs. Through their USS Translational Research Grants, guided by a dedicated Scientific Advisory Board, they have strategically targeted the crucial bridge between basic laboratory discovery and actual patient treatments—funding novel gene-delivery vehicles, preclinical drug screenings, and therapies designed specifically to rescue both hearing and vision cells.

More recently, their launch of the Pipeline for Usher Syndrome Research (PUSH) at Boston Children’s Hospital has taken this momentum further, tackling multiple forms of Usher syndrome simultaneously to accelerate optimized therapeutic candidates toward human clinical trials. Where families once faced silence and dead ends, the Usher Syndrome Society has built a dynamic engine of scientific collaboration and tangible progress.

Gavin practing in an outdoor pool for the USH X Alcatraz Swim